endometriosis on bowel after hysterectomy (Page 1)

I never knew you could get this after a hysterectomy? Have you actually been diagnosed?
I am also having major health issues since my hysterectomy with a bladder repair, small cyst removed with ovaries removed also.
I have the same problem as you regard not being able to go at and then I can’t stop going. I now require another bladder repair and have been told that I may also have a hole in my bowel and damage to the back wall of my bowel since the operation.
I would love to hear more from you please.
Best wishes CC

Im reading what you guys have said and it sounds familiar only I didnt have endometriosis. My doctor wanted me to sooo bad so she could blam my severe pain on this condition. My condtion worsened to the point I was staying bloated, going to the bathroom all the time and getting and less and less control on how much time I had before I had to go. All of this was with severe pain in my abdomen, uterus, my right side, and it even hurt to cough laugh, or sit. Needless to say after multiple ultrasounds I had no quality of life! I finally told my Md to just do surgery and see whats in there! I had scar tissue also known as adhesions behind my uterus and wrapped around my intestines! By the way any time you have an infection, surgery, or even a severe fall it can cause adhesions to form. So she cut my uteran nerve to help with pain. Now I have my life back but I always worry when I start to have pain in my sides or that wierd uteran pain again if the scar tissue is back. I've found that (evening)primrose oil really helped with my constant inflammatory condition .. so ask ur md or pharmasist if you can take it. It's over the counter and about$9. You can also take or drink alovera juice which will naturally boost your bodys ability to heal the affected area.
God will help you through this so good luck to you and try these remedies they really help! lori

i have been having the same problem I had a full hysterectomy due to endo nearly six and half years now but in the last 18mths I have been having alot of problems with bowels and bloating and swelling so my stomach is rock hard and then it can be completely the opposite I am also retaining alot of water if our sysmptoms are anything like this can you please let me at this stage getting a litle fed up wuld love to hear from you

Yes endo is NOT always cured by having a hysterectomy, I know cause I had one @ 32 but still have severe pain in right side (kept one ovary) and horrible problems with my bowels where doctors found adhesions & endo during several previous operations, so yes endo does & will come back if not treated durig the hysterectomy,all lesions have to be addressed or any little bit of estrogen will cause the eno to stay put & adhesions are horrible* Good luck to all*

jewels

Hi all had a full hysterectomy in may due to severe endo..had 2 previous surgeries but to no avail as after a few months cysts on overies grew bck,my uterus bladder bowel overies were all stuck together again...So this was no easy way out but a must.I am on a low dose of hrt but am starting to get that bloated feeling in my stomach again and pelvic pain..
Is it endo flaring up.....i think so....so what now??

I had a partial hysterectomy but not due to endo. I have noticed since my hysterectomy (1999)...I have had bowel issues. I was told it was IBS. I was also told that it could be adhesions causing some of my pain. I had 2 C-Sections & my hysterectomy cut on the same spot. You fix one thing that causes another issue. HAH!

i had a cyst removed and also endo has damaged my right ovary as well as damaged my bowel, what shall i do, i dont want a hysterectomy and would removing my damaged ovary fallopian tube, be ok. nas

DO NOT remove your ovary. Cysts are benign, although sometimes in painful areas. Endo can not "damage" an ovary or damage your bowels. It can/will grow on them, sometimes causing pain or harder time getting pregnant but it does not damage organs. It frequently webs the organs together and pulls them out of their usual places which causes mind numbing pain but no damage. I would look into if you have adenomyosis which is hard fibroid tissue like an old gnarled tree root. This is commonly found in addition to endo. A hysterectomy will not stop endo from re growth in 6 months to 3 years (like me ) It commonly grows back with a vengeance after a complete hysterectomy. The side effects of a hysterectomy are many and life changing. None of them fun or good. Most positive part/only part of my hysterectomy is I no longer stain my panties or soak my mattress in blood every 3 weeks. This is the only + side. Now the negatives, surgical menopause of which you will be instantly thrown into, after losing your ovaries or uterus. Hot flashes, mood changes, the bone density loss is mind boggling fast. Step off the curb and my ankle bone shattered. My libido disappeared and when it comes back 4-6 times a year, I need bottles of lubrication to comfortably allow penetration. I was so ashamed I could no longer get "wet" naturally with foreplay, I felt my husband would think I was not attracted to him anymore. I'm lucky, my husband said nothing about the use of large amounts of bottled lubricant I now need when before was not the case. Double lucky, he has not caught me clinching my teeth or crying through sex due to the pain. The toll the surgery and complications take on you are another story. Out of work for 4 months, complications of pneumonia from being put under anesthesia for surgery, the shingles from all the stress of surgery. I was a very active healthy woman. I lost my ability to bear children after the hysterectomy. So I can not give my husband a child. Last month I was diagnosed with both endo & adeno AGAIN, 3 yrs to the day of my hysterectomy. The pain is mind numbing. I went from a non drug using person (a 81 mg aspirin for prevention of heart disease was my big pain meds) in the past 2 months I now have a pain management specialist required by law to treat me. My options are another surgery to take out the endo, which can re-occur again so multiple surgeries every few years could be my life. The pain has me doubled over and crying most days, through use of a fentyl (100x more potent than morphine) patch worn 24/7, in addition to this patch I require 60mg of oxycontin,Q8 hrs and 15mg of perocet Q4 hrs to control "break through" pain so I can stand and walk not pain free but bearable. I went from 2 aspirin to this much pain control in less than 6 months. The woman who refuses Novocaine for a cavity or oral surgery. My alternatives are surgery or palliative care( which I'm on) I no longer work due to my inability to be able to move and walk with out pain. I often am not compliant with taking my pain meds so I can be a normal person who can work, drive, live a simple life but the pain is unbearable. I hide my pain as much as possible from my husband, who now has caught me doubled over and unable to breath due to pain. I no longer have quality of life. I'm ruining my family's life. I can not see doing one more surgery to get the endo that has returned again. The hysterectomy was the worst decision of my life. I suffered through it to be exactly where I was promised I would not be. No, menopause, does not stop it. HRT is only good for 6 months tops, with equally bad side effects. Did I mention with a complete hysterectomy there is no cervix to do a small laparoscopy day surgery? I will now have surgery through a large incision in my abdominal wall. In hindsight, I would NEVER have had the hysterectomy. I wonder everyday, had I chosen that path where it would have lead. It seems to me, I would have saved myself a lot of unnecessary pain and heartache if I had rode out the endo to begin with. I have nothing to say has improved after the hysterectomy, only gotten worse. Take the other path I didn't take. There are new procedures for you that are less invasive. One of them may work for you. Try at least to keep what God gave you as long as you can.

Endometriosis can grow back again on other organs...Bowels, Ovaries, behind Bladder or Uterus...The pelvic area is where they occur...

Caroline

thanks, i havent had a hysterectomy and dont want to go down that road, read all reports on people still struggling. i have had diathermy and cysts removed, i dont know what to do, surgeon mentioned alternative treatments. i worry about all the good hormones that will look after my bones etc, only 40 and may have years to live. any suggestions

I just had a total abdominal hysterectomy 3 weeks ago and am experiencing abdominal bloating off and on and frequent bowel movements (not normal for me). Every time I eat I have to go. Is this normal? Is the bloating normal? It seems to get worse with any kind of walking.

Hi,

I had a total hysterectomy last year,however being on various HRT treatments,my doctor had now put me on esterogen only HRT. I have read on many sites,estrogen feeds in HRT.

I have just had a MRI scan yesterday,awaiting to see my consultant next month,as I know that the Endo has come back, as doctors told me when I had the op,that some of the Endo has been left on my bowel.

Can any one tell me if I am being informed and treated right.

Thanks you,please help I do not know where to go next.

I had a partial hysterectomy in 1989. They went back in in 2000 and took my ovaries. At that time the endometriosis was so bad that my large intestines were attached to my left ovary and my small intestines to the right ovary. Both ovaries were attached to my back wall cavity. The doctor said it looked as if someone opened me up & poored super glue everywhere. He stated it was the worst case he had seen in all his years of practice. Since that then, I've struggled with IBS. I was also diagnosed with having a cyst in my lower left pelvic area 2.5 years ago. My doctor has been reluctant to remove it in fear of what he will find though - rejuvenated endometriosis. There had been no pain associated with it until this past Saturday, but since then it's been a constant ache. I saw my doctor this morning and got the same old story. I think we should wait a while longer and see if it calms down. He's so afraid to go back in. I can appreciate his reluctance, but I need to know what's going on inside me! I've made an appointment for June 7th with another doctor for a second opinion.

Beckystar... just curious how you made out with the new doctor on the 7th? I have been looking at a lot of blogs and see that many women are going through the same thing and doctors are taking way too long to diagnose/treat them...

And to answer some questions, YES... endometriosis can still grow after a hysterectomy. My partner is living proof!

Here's my partner's history:

in Jan 2006 at age 37 - went to ER - bad cramps - bleeding both rectally and vaginally - diagnosed with ovarian cysts and hemorrhoids - antibiotics to shrink cysts and hem cream

in May 2007 at age 38 - was still having same symptoms but was dealing with them the past year - now worse and back in ER - doubled over - bleeding both rectally and vaginally - cramps - gas - pressure - pass blood and then relief - diagnosed in ER with bilateral hemorrhagic complex ovarian cysts and CA125 elevated, which means either cancer or endometriosis. Had to quit work since she did manual labor which she could not perform any longer

Nov 2007 - still age 38 - hysterectomy - all but cervix removed - worse case of endo this doctor had seen, was attached to colon and had to be scraped off (ulcerated sigmoid)

Feb 2008 - now 39 - felt some relief after hysterectomy and vaginal bleeding is gone, but still having some GI discomfort and hemorrhoid problems with severe rectal bleeding - hemorrhoidectomy performed - worse case of inside/outside this dr has seen - treated for IBS

July 2009 - now 40 - symptoms never went away, just got a little better for a while and then really bad - after more tests and colonoscopy's they weren't sure what they were looking at on the inside - did a laproscope and found a lesion where endo was eating away at the colon - the surgeon removed the scope and then went in surgically - resected 2 areas of colon and removed appendix - areas were sent off and endo confirmed again

April 2010 - now 41 - GI problems went away for a few months but returned - sent to another GI specialist - many tests later, was given a clean GI bill of health - no IBS ro Chrohn's and sent back to OB/GYN

May 2010 - back to being doubled over - bleeding horribly rectally - pain - pressure - gas - cold sweats - irregular bowels - for days at a time - still can not work - can't even schedule a day to go to an amusement park without fear of needing the privacy of own bathroom - no life whatsoever

June 2010 - waiting for appointment with the new Ob/GYN on July 6th...

So, to recap:

hysterectomy - all but cervix
not on any HRT due to family history
still out of work
can't plan to go anywhere - no quality of life whatsoever

endo removed in 2007 during hysterectomy (colon scraped)
endo again removed in 2009 ( 2 resections plus appendix)
endo is suspected again - just waiting for appt to confirm

anyone else that has stories, please post... maybe one day this will be diagnosed and treated quicker if more people see our posts...

I had a total hysterectomy from stage 4 endo back in '99. Was 29 then. I was doing better thereafter and my quality of life was restored to an extent. But thereafter I had a real slowing of bowel movements. It has only gotten worse. I started to have "stomache spasms" a few years ago, so my doctors put me on meds for that. It worked for a while, but over the past 2 years, that medicine had less effect. Today, I am doubled over quite regularly and feel that endo pain in and around my pelvic area with the worse on my right side. All the drs. want to chalk it up to IBS, but some are now saying that it could be endometriosis that is causing all the pain, as it hurts regularly and even more so after a bowel movement. Nothing has shown on the CT and colonoscopy, but some of my drs. said it won't show; only another surgery will show that. Geez. After 12 laparoscopies, 10 cystoscopies, an appendectomy (yes, because of endo.), a hysterectomy (and of course, was never able to bear children cause the endo. deformed my tubes), who wants to go through another surgery?!!! I thought my horrible 20s were over, but here I am again, 12 years later. So, endo can really reappear?

Since diagnosed @ 19, 6 surgeries, plus every drug you can think of. Hysterectomy last November at 36, all but cervix removed. In the last month, endo pains are back plus all symptoms - depression, & of course wicked cramps, exhaustion, pain with deep penetration,...how is this possible??? I saw my GP and was told that they probably missed some and its feeding on the Estrogen from my HRT. So lets see, pain free for 8 months. I go to see my surgeon in September. Cramps are already lasting over a week. have no idea how long it can last, as I no longer have a uterus. Anyone have any ideas?

Since my dx of endometriosis in 2000, it has caused hydronephrosis in 1 of my kidneys. 4 laparoscopies and over 10 stent insertion surgeries later...im now losing functioning in that kidney. Drs are recommending a hysterectomy and nephrectomy. When I went to have the presurgical testing for yet another stent insertion in '06, i found out the best news that i was pregnant (i was told only had 30% chance due to stage IV endo- the worst case that my drs had seen)and i had 1 miscarriage and painful cramps prior. Since i had my daughter in 07, the abdominal cramps stopped but i developed sciatica in 1 leg (w/ numbness and debilitating pain), and began to have GI problems which have gotten worse and I have recently been having frequent bowel movements.
I'm 38 yrs old and have been going to a urologist for 10 years, and am now seeing a neurologist and gasteroenterologist. I've recently had an EMG with my neurologist and acolonoscopy which were both negative because the endo is outside of my colon and leg functions fine when im asymptomatic. My husband is a hospital administrator and even took me in for an MRI when i was symptomatic but the endo was too subtle to detect. My surgeon said the laparoscopies are not showing endo on my bowel and he cant look at my leg.
I'm going to try a wholistic dr soon because I don't know what else to do before the hysterecomy, which according to some of these posts does not seem to be helpful in terms of stopping the pain due to endo that is remaining. If anyone has tried this route, please share your info. I hope that soon drs pay more attention to research re: this disease. There is no federally conducted research study re: endo and dieting, although some websites have been very helpful like endoresolved. Best of wishes to everyone for health and an improvement in our quality of life! CNN07

gnash2010

I sympathize with you all. I had surgery in May of 2009. I don't think that I had endo (at least I wasn't told that I did).I was told that I had scar tissue from my Primary care/ob doctor after I went for my yearly checkup. I have been told that it was going to be sore for the 1st year or two. But I'm not sore. However as of today, well for the past 3-4 wks, I have been having uncomfortable pain in my lower abdomen. If feels more like someone is sticking me with something or something is pressing down on my pelvis area. Gas pressure. I had asked questions about my bowels and bladder and if the surgery affected them because of the pressure.I know that I have IBS (Irritable Bowel Syndrome) patient from 2007, I even was advised last month to get an ultrasound. The only thing that was found from the ultrasound was me ovulating. I don't know if this has anything to do with my discomfort, but I stay cold a lot. It has become very hard for me to sit still. As of today, I have called my Primary care physician to see if she can refer me to a specialist. I hope someone can tell me something w/o having to have surgery because this is a very uncomfortable feeling.

I was diagnosed 3 years ago with severe endo the surgeon said it had blocked my left fallopeon tube, and caused scarring and adhesions on both ovaries, tubes my womb and basically said if I wanted a child I would have to go through IVF.
Earlier this week I had another laparoscopy where they where going in to try and remove some of the endo (this is after many months of hormone injections and tablets).
When I woke up after the op the sergeon said to me that they couldn't remove any endo as when they went in they found my left fallopeon tube is destroyed and stuck down to my womb, my right ovary has gone giant size and filled with blood with a cyst inside it, also the endo has dragged my bowel up and "super glued" it to the back of my ovary with the cyst in. They said when they saw this they had to stop incase they punctured my bowel which was very possible they would do causing either death or my having to wear a bag possibly for life I have to wait until Feb so they can think of a safe way of going about this op which they will be doing through open surgery. I'm only 22 has anyone got any advice in this please xx

I had endo 19 years ago had it removed by laparoscopy . Had my son then had to have a full blown hysterectomy because of Endo severely again. It encased everything. I am no scheduled for Gallbladder removal because I have been sick always nausea daily. Can't eat meat I throw up. Full feeling bloating after I eat etc.. I had an ultrasound done and found I have gallstones. If your having these symptoms get your gallbladder checked. Heartburn etc is another symptom.

ok I have read EVERYONES Blog here I am 44 yrs old I had Hysterectomy when I was 25 Left my ovaries Due to endometriosis the dr I seen says this is the worst cast he had ever seen I had it in my groin area not to mention both sides anywayyy I went back at 39 yrs of age and had another spot removed thinking it was my bladder but it was in my ceserean Scar BUT now I am thinking it is on my bowels I Would like ANY information anyone can give me DUE to the fact I have a 5000 deductible on my insurance I really can not afford this but IF it is possible that it can be on my bowels I want rid of it , It is just odd I have had hemmoriod surgery also and was thinking that it could have been something they done when they done that surgery which is called STAPLING but the more I read I am thinking its endometriosis ughhh please give me some info if you have any THANKS

Wow. I started my period at age 10. From day 1 I had diarrhea, cramps, throwing up and severe pain. Clots, excessive bleeding and extreme pain...I was told it was "normal" and stop whining. I never had periods that were in a cycle...they were from 20-60 days apart. I had my first cyst at age 16, my first child at 18, second child at 22, miscarriage at 23, third child at 25 and hysterectomy due to endometriosis at 28. The dr said it was the worst case she had ever seen. They also found a 3 cm mass of dysplasia while removing my uterus. I had bled for 13 months prior to my hysterectomy...pretty much every day. I was in and out of the ER many many times. I was given pills and shots to stop the bleeding..to no avail. They left my ovaries because I was so young. I had alot of problems with my bowels after the operation. Then when I was about 40 I had an MRI done on my back and they discovered a cyst on my right ovary. I went in to have it removed and at that time she also checked my left ovary and spent over an hour removing it from my bowels. So I still have 1 ovary left...that is all. Last september I started with severe diarrhea. My bathroom is right next to my bedroom and there are times when I can barely make it to the toilet. I go back and forth between constipation and diarrhea. In January I went in and had a colonoscopy done...they said everything was "normal"...well everything isn't normal. I am sooooo glad that I found this site!!!!! I have been to my family dr about 4 times for this since September and all she seems to want to do is put me on another pill (I am on 16 a day now)..and I want answers. I will be making an appointment to go and see the ob/gyn that did all my previous surgeries...and I will be printing out these postings and taking them with me! Thank you ladies so much...and remember that none of us are alone!!!